Suvivorship Needs

Posted 1/25/2016

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This is clearly a topic whose time has come. If you read cancer publications other than this blog, you surely will have seen much written about the needs of patients after treatment has been finished. Even if all you read is this blog (and thank you), you will have seen multiple entries about this. Until fairly recently, little attention was paid to the medium and long term possible side effects of chemotherapy and radiation. Very honestly, most cancer patients didn't live long enough for those things to become problems. Blessedly, times have changed and improved, and there are millions of cancer survivors living long and well in the US and around the world.

The American Society of Clinical Oncology (ASCO) recently held its first conference devoted entirely to survivorship issues. I did not attend, but I have read a lot about it; there were many medical presentations, but also a number that focused on psychosocial concerns.

There are so many ways to think about this: physical/medical issues, cost, time costs (e.g. multiple medical appointments that require time away from work), psychological issues like PTSD, changes in sexuality/intimacy that likely impact marriages, inability to purchase life insurance except through employers, changes in friendships and many important relationships. Anyone who has been through cancer understands that the experience changes us. My observation is that a few people make very big changes in their lives (my favorite example being a dentist who sold her practice, bought a bigger sailboat, and, with her partner, literally sailed off into the sunset), but almost all of us make at least small adjustments around the edges of our lives.

This is an interesting summary from CancerNet:

Survivorship Care: Addressing the Challenges that Come After Cancer
Treatment

During active treatment, a person’s focus is often completely on the cancer: getting rid of it,
managing side effects, getting better. The future may feel uncertain, and it can be hard to think
about the next step. And, many people may be looking forward to leaving the cancer behind,
regaining a sense of normality in their lives, and getting a break from the challenges
associated with treatment. Transitioning into survivorship, the period after treatment, can bring
new, unexpected challenges, such as long-term side effects and continued medical care.
Doctors and researchers are examining the challenges patients experience after treatment to find ways to prepare for and manage them. Some of these issues are highlighted in 3 studies to be presented at this week’s Cancer Survivorship Symposium.

The importance of follow-up care
An important way for patients to manage challenges, such as long-term side effects, is to have continued follow-up care cancer treatment. In one study, researchers found gaps in care for 354 adolescents and young adults who received treatment for Hodgkin lymphoma. Although, nearly all (96%) had the recommended oncology visits and 70% received the recommended lab tests within the first 5 years, about half did not receive all the recommended care within the first year treatment.
“Patients treated for Hodgkin lymphoma are at high risk for recurrence and relapse, as well as serious long-term and late effects,” said lead study author Erin E. Hahn, PhD, MPH, a research scientist at Kaiser Permanente Southern California, Department of Research and Evaluation. “We need a systematic way to deliver post-treatment care, including screening for late effects of treatment.”

The cost of follow-up care
The second study addressed the challenges associated with the cost of follow-up care. Researchers found that breast cancer survivors with a low income were more likely to receive recommended survivorship care when they received personalized survivorship counseling and care plans.
“Cancer care does not end when treatment stops. Survivorship care plans are an important tool for keeping patients healthy the long run, in terms of screening for second cancers and long-term side effects. Low-income patients face unique challenges in accessing this care,” said Merry-Jennifer Markham, MD, ASCO Spokesperson. “This study is an important step forward, demonstrating that personalized care plans in conjunction with one-on-one counseling on survivorship care can make a real difference for patients.